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A Conversation with Peter Bell, Executive Vice President of Autism Speaks, and John Robison, Author of Be Different

April 11, 2011 2 comments

This is a conversation with Peter Bell, Executive Vice President of Autism Speaks, and John Robison, Author of Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers
(Crown Archetype, March 22, 2011)
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Peter Bell: Be Different has a lot of wonderful advice and insights for young people who struggle to fit in. But for those with more severe forms of autism, “being different” may not be their greatest challenge. Does your advice change at all for kids and families who are living with challenges of classic autism?

John Robison: Be Different is written for people with Asperger’s and what I call “other geeks and misfits.” The principal difference between those folks and others with traditional autism is that they do not have the severe language challenges.  The “verbal but socially impaired” population this book speaks to represents the largest group of young people in special needs education today.

There are millions of young people who we might say, “look and sound normal,” yet they struggle to fit in. Until now, no book has spoken to that huge audience. I hope to change that with Be Different. Individuals with severe language impairment may well share the challenges described in this book, but the language and communication issues will be of overriding concern.

PB: If you had been diagnosed with Asperger’s syndrome earlier in life, how do you think your childhood and adolescence would have been different? Do you think your parents or teachers would have treated you differently?

JR: I hope so! Certainly one of the basic tenants of special education is that we recognize the differences in our kids and develop individualized education plans to bring them along. In my day, my differences were dismissed as defiance or laziness. That led to failure in school and low self-esteem that haunts me to this day.

If my teachers had known about Asperger’s, I might have been assigned a guide to keep me focused and moving through school. I might have been given study materials that were actually appropriate for my skill level. With changes like that, I’m sure I could have graduated high school and gone on to complete college. Who knows where life would have led me then?

PB: You’ve met my teenage son, Tyler, a few times, and you two seem to have a strong connection. He was immediately drawn to you, and you showed a wonderful desire to connect with him. In fact, you were decidedly social with him. Do you find yourself drawn to other autistics in a different way than “nypicals?”

JR: Yes, I do. I don’t know how to explain that except to say some of us autistic people recognize our own kind at a very elemental level. When you think of sorting out people by similarity you probably imagine grouping people by height, or race, or even hair or eye color. What people like Tyler and I see in each other is immeasurably more subtle than those superficial traits, and we seem to match each other up instinctively.

I connect with many autistic people, and they with me. It happens enough that there’s no denying the reality of the phenomena, but I can’t explain exactly what we sense in each other or why we find it comforting.

PB: My wife, Liz, has commented that your gaits (how you walk) are pretty similar, but your “autisms” are very different. Why do you think that is the case?

JR: Scientists believe there are many biological and environmental paths into autism. In the next few years we may end up identifying over a thousand genetic variations that are implicated in autistic disability. All those variations lead to a similar set of differences within the brain and the communication and behavioral challenges we observe.

Those brain differences may have innumerable external manifestations. Our distinctive walk may be one of them. Some scientific studies have shown autistic people have uniquely different patterns of speech and characteristic “nonstandard” facial expressions or eye movements. More and more of those characteristics are discovered every day, and the “gait of autism” may one day be a diagnostic feature.

That deep-rooted commonality is one reason I think this book’s appeal is so universal to people with neurological differences. The only caveat to that is that profound speech challenges will always take precedence over the social behavior that is Be Different’s focus.

PB: You mentioned at one point in your book that “language came to me naturally, . . .  wisdom was really tough to obtain.” Interestingly, I think the opposite is true of my son with autism—at times he seems to have wisdom beyond his years but his language is severely impaired. What do you make of this difference?

JR: That is the great puzzle of autism. It’s a mystery why many people with Asperger’s share my gift of exceptional clarity of speech combined with profound social disability, and others with traditional autism may have no speech at all. It almost seems opposite, and I can’t explain it except to say autism touches each of us differently.

Tyler’s inability to hold a normal conversation means he has a lot of time to reflect inwardly, to think about the world around him. I have written about how my own social isolation helped me develop the reasoning power that got me where I am today. Given that situation it’s no surprise he seems wise; he has a lot of time to watch and ponder, freed from the constraints of speaking whatever comes to mind from moment to moment. He’s a thoughtful person; it’s just that his language challenges prevent us from hearing and sharing those thoughts much of the time. My situation is opposite. My childhood command of language was so good that people expected matching wisdom, far beyond my years, and it just wasn’t there.

PB: You mention that “Autism in its many forms is not a disease.” However, we know from historical experience that autism can be caused by infections (for example, maternal rubella or influenza during pregnancy) or other environmental factors (for example, thalidomide or valproic acid use). Research also shows that about one-third of the current population of children with autism have a regressive form. Although the terms “disease” and “disorder” are fairly synonymous and generally mean deviations from accepted or “normal” physiological or psychological functioning, is it possible that some forms of autism could be “abnormal” rather than just different?

JR: Sure. I use “difference” rather than “disease” because the latter word suggests a temporary condition, which autism is not. Some diseases can be cured; others kill you.  Autism is neither curable nor lethal.

The other consideration is that autism—being a brain disorder—becomes woven into our very being. Our autistic differences shape the way our brain wires itself as we develop and live in response to life’s events. Even if one could magically remove the underlying autistic difference, the “different brain wiring” would necessarily remain. That’s why I don’t think talk of a cure is realistic, while at the same time I work very hard to promote the development of tools, treatments, and therapies to remediate the specific components of autistic disability.

As promising as the future may be, at this moment, those of us with autism must make our best life the way we are today. That is the essential message of Be Different.

PB: Thank you for your description of how predictability is a critical condition for many on the autism spectrum. We think that this may explain why Tyler is fearful of dogs and other domestic pets while at the same time being fascinated by them. He is much calmer with animals on a leash than those that are running free, a distinguishing feature that he figured out himself. Do you think the predictability issue explains his behavior?

JR: I know routine and predictability are really important to lots of autistic people, me included. I believe anxiety is one of our dominant emotions, and in the case of an animal, that anxiety is going to be markedly reduced if the animal in question is under control in some fashion.

Several stories in Be Different show how I addressed those issues in my own life.

PB: Have you started thinking about book number three yet? If so, what do you plan to cover?

JR: My third book is tentatively titled Raising Cubby. It’s a tale of fatherhood, Asperger’s, chemistry, and the Bureau of Alcohol, Tobacco and Firearms. I hope it proves to be an entertaining and enlightening book.


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